Help Ethan to Cystinosis conference

Help us get Ethan to California to meet up with other kids with the same rare disease, have some tests done and find out how close we are to a cure.  My name is Amanda Fenn and I am a mother of 5 young children from Rutherford Australia, one of who has a very rare genetic disease called Cystinosis. My 5 year old son Ethan needs medication every 6 hours to keep him alive otherwise his organs will fail and the unthinkable will happen. There is NO CURE for Cystinosis yet though the FDA have just approved stem cell trials which should start mid 2019. We will find out the results at the next Cystinosis conference in 2020. Cystinosis is a metabolic disease characterised by an abnormal accumulation of the amino acid cystine in various organs of the body such as kidneys, eyes, muscles, pancreas and brain. Different organs are affected at different ages and without treatment some or all of these organs will fail. There are only 2000 people diagnosed worldwide with only 43 of these people being in Australia. We have been invited to attend a Cystinosis conference in California in 2020. What does this mean you ask? Well this means that our family, especially Ethan will get to meet up with others with the exact same disease as him (he will finally get to feel that he is not alone). We will be able to gain some indepth information about the disease and find out more about a medication that is slow releasing meaning he will only need to take it twice a day rather then every 6 hours like he does now. This will also give us the chance to meet the people that work behind the scenes to finding a cure for our little man and follow up on a study they perform in the US. With the conference being held in California our wish now is to raise enough money for our family to attend the conference and show Ethan he is not alone when it comes to this disease and way of life. Ethan is the face of this year's Jeans for Genes campaign so you might see his face around on billboards and in magazines. You can follow Ethan's journey on his Facebook page called Ethan's Endeavour. Ethan's Story: Ethan was born September 2013 and everything seemed fine. As time went by and he was getting older we realised that he wasn't thriving like a baby his age should be. We took him to 3 different pediatricians, had blood and urine tests and was admitted into hospital twice for being dehydrated though was told that each child develops at their own pace. Ethan was not crawling, talking, or even sitting without support by the age of 11 months so we knew something wasn't right. After pleading with the pediatrician to find out what was wrong we were admitted to hospital again and Ethan went through 3 days of being on a drip, having 7 blood tests, 4 urine tests, 2 stool tests and a number of different doctors coming to see him. We were eventually referred to the Renal Clinic at Westmead Childrens hospital because they informed us that his kidneys were leaking all the essentials we need.  On the 19th September 2014 (2 weeks before Ethan turned 1) I was told that he had Cystinosis. I had no idea what this was and had never heard of it before, so i sat at the hospital and looked it up on the internet. That is when it felt like my heart had been ripped out and my world had fallen apart. It was one of the most hardest days for me and i held Ethan so tight telling him we will get through it together. In the months following Ethan had numerous hospital visits which consisted of blood and urine tests, dietician appointments, renal treatment clinic appointments, eye specialist appointments which resulted in alot of tears. Slowly we could see that Ethan was puting on weight and starting to see him try for milestones. After 16 ½ months Ethan finally took his first 4 steps and it just happened to be witnessed by both myself and Chris. This really touched our hearts as Chris is normally at work and doesn’t get the witness big milestones like this. There were tears of joy and Ethan’s siblings were cheering him on. We have all been waiting for this day to come when our little man has enough muscle tone in his legs to carry his body without assistance. So so happy. Ethan was admitted to Westmead Children’s hospital today to have surgery to insert his gastrostomy tube into his little belly. After making him fast all day they finally took him in. It was so horrifying seeing my little man screaming one minute because he didn’t like the doctors holding the gas mask on his face to then seeing him so floppy laying in my arms. His surgery was intended to take 1 hour though 2 ½ hours later he was still not out. My heart dropped and the tears welled up in my eyes obviously thinking the worst. Ethan is now 5 and is still underweight for his age though will celebrate every 100 grams he puts on. He will smile even though he has to take his disgusting tasting medication or get hooked up to his feeding pump every night but there are times when he tells you he doesnt want it any more. I appreciate your time in reading Ethan's story and hope you may be able to help in some way. Kind Regards Amanda


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Amanda Fenn 
Maitland, NSW, Australia
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